Monday, February 1, 2016


It goes without saying that parenting in general is not easy.  It also goes without saying that being a special needs parent is a completely different experience.  Where I feel I slack in parenting my typical kiddos it does not feel as disastrous as the areas I feel I may slack with Sonzee.  With my typical kiddos I am confident that the decisions I make for them (whether my kids are happy in the moment or not) are not going to cause them to need any additional mental therapy to what they'll require as adults just being products of Sam's and mine :-).  When it comes to Sonzee, it is ALL different.

This morning I started feeling bummed about the bear's desire (or lack thereof) to participate and engage in activities to help with her development.  Sam and I decided awhile back that we would follow her lead and if she was not going to be on board, we were not going to force her.  We have truly been embracing the concept of celebrating her daily presence more than what her physical capabilities are.  I have been content because she has been content.  This morning however was one of those mornings where I was derailed.  I saw another child who has a CDKL5 mutation do things I can only dream Sonzee to be able to do.  Naturally, I immediately took the bear and started trying to make her to do things that she is just not ready for.  I will summarize the outcome for you; it led to both of us in tears and me sending Sam a text of frustration.

Sam and I do not always see eye to eye.  Half the time I do not even feel like he gets what predicament I am in spending all day every day with her with little to no break.  Then there is a day like today where dare I say, my knight in shining armor (please don't let this go to your head) came home, walked up to me with his arms open for a hug and said "We broke a rule.  We are not supposed to compare her to other kiddos with CDKL5; it is not fair to her.  I know you are upset over what Sonzee is not doing.  I thought we decided we were going to just enjoy her, because the truth is Randi, we do not know how long she will be here.  I know you are frustrated, she is frustrated.  You are not a failure."

The tears welled up in my eyes.  Right there, those words, my EXACT feelings neatly packaged into one five-word phrase.  YOU ARE NOT A FAILURE.  What is it that makes us as parents immediately feel it is our fault if our kids do not do something?  Why do we so critically judge and question our parenting based on singular circumstances?  Why is it we immediately accuse ourselves of not doing enough?  

I have to really start to believe that it is NOT me.  I am doing everything I can for this little girl, and the truth is it may not be enough because I cannot give her a healthy CDKL5 gene, but that is out of my capabilities.  I am doing the BEST I can, the BEST for her, the BEST in this situation.  Whether she is unable to sit on her own, whether she is unable to crawl or walk, or whether she is never able to sing and dance, none of those things will be the result of my failure as a mother.

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